Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@rwinney

Said it before and I'll say it again…You are THE MAN John Bishop!!!!

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Aw shucks Maam…you're the BEST!

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@johnbishop

Aw shucks Maam…you're the BEST!

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😁

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@johnbishop

Hi Teresa @hopeful33250 @rwinney — Here's a description of the zero gravity setting.

The position relieves the pressures of gravity from the body by distributing the body's weight evenly to permit for the right amount of needed support. Zero Gravity in the adjustable bed frame allows for the legs and head to be raised at just the right angle to reduce back pressure and increase circulation.

I think the Sleep Number is a good option but I'm looking at a Ghostbed adjustable frame and mattress since I can get two XL single frames together (both adjustable individually) for a lot less money than the Sleep Number. We had a Sleep Number bed when they first came out and I loved it. Over the years it started losing air and we got a Ghostbed mattress and used the Sleep number frame. I was probably too large for the bed ☺ — 300+ pounder on one side of the bed was me. Fortunately I'm no longer at that weight and eating much healthier.

Here's more information on how the zero gravity helps: https://www.ghostbed.com/education/benefits-of-zero-gravity-adjustable-bed-base/

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Thanks for the explanation, @johnbishop! I'm planning on getting an adjustable bed so this information will be helpful.

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Hi! I’m Janelle;) I’m a mom to an almost 2yr old beautiful boy, wife, daughter etc who has lots of chronic pain conditions including EDS, CRPS, IC, LPHS, Fibro etc. I’m trying to figure out how to treat my pain with less pills and more treatments such as IV lidocaine, magnesium, ketamine. I’m sick of pill pushing doctors and am in the process of replacing half my current doctors. We live in northern Wisconsin and I find it difficult to find alternative treatments that aren’t far away. I’m looking for advice, education, peoples experiences and help finding the pain relief I’m going after, especially for my CRPS neuropathy. Hello and I look forward to meeting you and some good old open minded discussions! Xoxo

FD403021-E5E8-4529-8071-BB7C3E1D7B6E

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@gashmell

Hi! I’m Janelle;) I’m a mom to an almost 2yr old beautiful boy, wife, daughter etc who has lots of chronic pain conditions including EDS, CRPS, IC, LPHS, Fibro etc. I’m trying to figure out how to treat my pain with less pills and more treatments such as IV lidocaine, magnesium, ketamine. I’m sick of pill pushing doctors and am in the process of replacing half my current doctors. We live in northern Wisconsin and I find it difficult to find alternative treatments that aren’t far away. I’m looking for advice, education, peoples experiences and help finding the pain relief I’m going after, especially for my CRPS neuropathy. Hello and I look forward to meeting you and some good old open minded discussions! Xoxo

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Kratom & Curcumin

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OMG….love, love, love that beautiful face! He without a doubt keeps you going and focused to the best of your ability. 😍

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Thank you! He’s our triple rainbow baby. He sure does keep me moving forward in this life;)

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@gashmell

Hi! I’m Janelle;) I’m a mom to an almost 2yr old beautiful boy, wife, daughter etc who has lots of chronic pain conditions including EDS, CRPS, IC, LPHS, Fibro etc. I’m trying to figure out how to treat my pain with less pills and more treatments such as IV lidocaine, magnesium, ketamine. I’m sick of pill pushing doctors and am in the process of replacing half my current doctors. We live in northern Wisconsin and I find it difficult to find alternative treatments that aren’t far away. I’m looking for advice, education, peoples experiences and help finding the pain relief I’m going after, especially for my CRPS neuropathy. Hello and I look forward to meeting you and some good old open minded discussions! Xoxo

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Hi and welcome! – I'm Rachel and you my dear came to right place. You will soon see how much support, compassion and knowledge comes from this forum.

My babies are grown (soon to be 19 and 26) but they remain my main force, focus and reason for persevering. Plus, I'm pretty stubborn and don't like to be knocked down by anything, including disease!

Best thing for you to do is continue being your own advocate, comb the many threads and posts regarding your diseases, chronic pain, medications and procedures. Others life experiences are far more inspirational that what any Dr or text book (internet) has to pprovide.

Be mindful however that each is unique to themselves and you may need to navigate through it for your best take away.

Best of luck and happy you are reaching out. What a step in the right direction!

Be well and be thankful you have those cute little cheeks to smooch.

Warm regards,
Rachel

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@rwinney

Hi all. I purchased a Sleep Number bed 2 years ago for pain reasons. It was quite costly however worth It overall. My husband loves the zero gravity setting as @johnbishop referred to. I am all over the map with my settings. Unfortunately, my neuropathy has a mind of its own and every day may be different, resulting in different sleep needs. Sleep Number is definitely worth a try if in the budget.

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Hi
I guess I am the fly in the ointment. I never slept on anything so uncomfortable in my life and I send it back. I had a backache nearly the whole time I was testing it out
You couldn’t pay me enough to own one.
Jake

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Sorry to hear that. Look at it this way…you saved a bundle!

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@gashmell

Hi! I’m Janelle;) I’m a mom to an almost 2yr old beautiful boy, wife, daughter etc who has lots of chronic pain conditions including EDS, CRPS, IC, LPHS, Fibro etc. I’m trying to figure out how to treat my pain with less pills and more treatments such as IV lidocaine, magnesium, ketamine. I’m sick of pill pushing doctors and am in the process of replacing half my current doctors. We live in northern Wisconsin and I find it difficult to find alternative treatments that aren’t far away. I’m looking for advice, education, peoples experiences and help finding the pain relief I’m going after, especially for my CRPS neuropathy. Hello and I look forward to meeting you and some good old open minded discussions! Xoxo

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@gashmell Hello!! I'm also from northern WI, Lakewood to be exact. Are you far from me? I have 4 providers that I see and it took many years to find them. I had to weed out so many over the years! Anyway, one of them is someone I think you should see. Her name is Dr. Linda Bluestein and she owns Wisconsin Integrative Pain Specialists in Weston (right by Wausau). She specializes in EDS and many other areas as well. She can talk to you about infusions too. She gives me Ketamine troches (dissolve under your tongue) and they work very nicely. She has all kinds of tricks up her sleeve. Please check her site out https://www.wisconsinintegrativepainspecialists.org/ Please let me know what you think and if you end up going to see her. Best of luck to you!
Terri

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@qball2019

@gashmell Hello!! I'm also from northern WI, Lakewood to be exact. Are you far from me? I have 4 providers that I see and it took many years to find them. I had to weed out so many over the years! Anyway, one of them is someone I think you should see. Her name is Dr. Linda Bluestein and she owns Wisconsin Integrative Pain Specialists in Weston (right by Wausau). She specializes in EDS and many other areas as well. She can talk to you about infusions too. She gives me Ketamine troches (dissolve under your tongue) and they work very nicely. She has all kinds of tricks up her sleeve. Please check her site out https://www.wisconsinintegrativepainspecialists.org/ Please let me know what you think and if you end up going to see her. Best of luck to you!
Terri

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Wow! What a fabulous resume. I may have to move to Wisconsin.😁

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@qball2019

@gashmell Hello!! I'm also from northern WI, Lakewood to be exact. Are you far from me? I have 4 providers that I see and it took many years to find them. I had to weed out so many over the years! Anyway, one of them is someone I think you should see. Her name is Dr. Linda Bluestein and she owns Wisconsin Integrative Pain Specialists in Weston (right by Wausau). She specializes in EDS and many other areas as well. She can talk to you about infusions too. She gives me Ketamine troches (dissolve under your tongue) and they work very nicely. She has all kinds of tricks up her sleeve. Please check her site out https://www.wisconsinintegrativepainspecialists.org/ Please let me know what you think and if you end up going to see her. Best of luck to you!
Terri

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Terri, great job coming through with information. Perfect example of how we can help each other through Connect . I'm with @darlingtondoll and may move to Wisconsin too!

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@darlingtondoll and @rwinney

Thank you! I truly care for anyone in pain. I have suffered for 17 years now and have seen so many doctors that brushed me off and labeled me a "chronic pain patient" like I didn't matter, a few thought I was a drug seeker, many that didn't believe anything was wrong with me, etc. It's been such a nightmare trying to just find some help and a bit of relief from the pain. People don't realize the affect it has on you physically and emotionally. I wish I had someone to guide me to the right people. I have 4 providers that actually work together on my care and it's just so great. I hope she is close to me because I can also recommend my pain management and physical therapist. Dr. Bluestein has been so wonderful to me. She is the first doctor that has ever taken the time to read through my medical history from start to finish. She is also extremely informative and is willing to think out of the box. I was excited to find out that she has also had a Tarlov cyst so she completely understands my pain. She has people from all over the U.S. come to see her so why don't both of your make a trip? I know you won't regret it! 🙂

I am still looking for a neurologist. Nobody that I have asked can recommend a decent one within 100 miles and definitely not one that would be willing to recognize my Tarlov cysts. If anyone has any suggestions please let me know.

Take care everyone!

Terri

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@qball2019

@darlingtondoll and @rwinney

Thank you! I truly care for anyone in pain. I have suffered for 17 years now and have seen so many doctors that brushed me off and labeled me a "chronic pain patient" like I didn't matter, a few thought I was a drug seeker, many that didn't believe anything was wrong with me, etc. It's been such a nightmare trying to just find some help and a bit of relief from the pain. People don't realize the affect it has on you physically and emotionally. I wish I had someone to guide me to the right people. I have 4 providers that actually work together on my care and it's just so great. I hope she is close to me because I can also recommend my pain management and physical therapist. Dr. Bluestein has been so wonderful to me. She is the first doctor that has ever taken the time to read through my medical history from start to finish. She is also extremely informative and is willing to think out of the box. I was excited to find out that she has also had a Tarlov cyst so she completely understands my pain. She has people from all over the U.S. come to see her so why don't both of your make a trip? I know you won't regret it! 🙂

I am still looking for a neurologist. Nobody that I have asked can recommend a decent one within 100 miles and definitely not one that would be willing to recognize my Tarlov cysts. If anyone has any suggestions please let me know.

Take care everyone!

Terri

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Hi Terri
I commend you for enduring 17 years of chronic pain. As I'm approaching 4, I continue to adapt and learn more about myself and what I'm made of. It certainly tests one mental strength and is always inspiring to find someone like yourself who has been there before us. I crave finding a Dr. who wishes to make me priority and you are very lucky to have found Dr. Bluestein…that's awesome!
Best wishes to you.
Rachel

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